I’m new to this group and have spent a few days reading through some of the threads, which have been very helpful and reassuring. My brain does not feel right. I’ve felt that way at times for the last few years, but in the last several months, the symptoms seem to have compounded and I find that I am spending an equal number of days lying on the couch as I am functioning at a normal (for me) level.
I have had a diagnosis of bipolar disorder for over a decade. I have taken Depakote as well as Topiramate for over 5 years as well as Lithium, Quetiapine, and in the Fall/Winter I have taken Wellbutrin for SAD. I have been titrated off the Wellbutrin and and am currently titrating off the Topiramate. Both, my neurologist and psychiatrist thought were causing my symptoms. So far, the symptoms persist.
My most disquieting symptom is what my GP is calling ‘seizure-like activity.’ For three months I have been having clusters of episodes where I retain consciousness, but lose my ability to move, process information or speak. Once, for example, I was putting away a jar of mayonnaise, and my body and mind began to freeze. I stood there with the jar in my hand, and it was as if I had no concept of what ‘mayonnaise’ was or ‘cupboard.’ In those moments my body feels like a machine slowing down and stopping for 20 seconds to one minute and then I’ll come out of it. Then my head aches like pressure in my skull and my ears. The pain lasts for days or weeks and more of these episodes occur if I keep moving - even the smallest activity seems to provoke them. My body feels weak, I am exhausted and I have to lay down most of the day, because I get vertigo and sometimes nausea and laying down for a while relieves the pressure and I can move again- until the vertigo hits and I have to lie down again. At night I struggle with sleep, with the pain in the back of my head, a sensation of swirling behind my eyes, and that constant pressure in my skull.
Occasionally I experience tinnitus, I notice that I don’t swallow the same way - it’s a strange navigation to get food down and I cough more than I used to. And the beyond the fatigue is the weakness. Like I’ve lost the strength to pick up a small bag of groceries. This last round of episodes was accompanied by the worst headache of my life. It lasted 5 minutes, but made me cry. I’ve also experienced a new sensation of ice cold water rushing over my skull from the back of my head.
I have only just begun seeing a neurologist about a month ago and he ordered an EEG. My GP had already ordered an MRI and CT scan. The EEG was performed when I was feeling well and all of my tests were negative/ normal. The only thing that my neurologist mentioned, in passing, was that I have Chiari 1, but he said it was minimal and dismissed it. He didn’t look at the MRI pictures, he only read the radiologists notes in front of me and my husband. He referred me to a psychiatrist to get my meds adjusted.
There are a lot of posts on this site. It’s very helpful to know I am not the only one who has strange neurological symptoms and been referred to a psychiatrist. I’ve been living with Bipolar a long time, my husband is a wonderful ally for me and helps me see myself clearly when I am losing myself to mental illness. This is not mental illness and we both recognize that. Something doesn’t not feel right with my brain in an entirely different way from mental illness.
I’m having a hard time advocating for myself because I am very tired. Whatever is happening to me is physically exhausting and I’m a perfect world, I would not have to struggle with insurance companies or doctor’s egos to be heard, validated, and recurve quality medical care.
This is not a perfect world. So I’m trying to pace myself, and only do what I can with the energy I have today.